I have pledged to Walk for a Reason!

I want to make the miles count as I Walk for a Reason. Let me tell you about my 11 year old daughter, Lilly... She is the sweet, beautiful, kind, affectionate, smart, curious, as well as many other amazing things. However, she also a rare genetic disorder, DUP15Q as well as autism.

The way that I like to describe DUP15Q is one of her genes tried to copy itself (similar to down syndrome, just a different chromosome), however often times it presents very similar to autism and a large amount of people diagnosed with DUP15Q are also diagnosed with autism. The unfortunate side effect is often times they also suffer from epilepsy (seizures) as well.

This is why this cause was started and was also the case with my daughter. We were literally scheduled for an appointment to discuss our concerns about seizures when 3 hours before she had her first gran maul seizure. I won't get into details, but I can seriously say it's the scariest moment for a parent to think they will hold their child as they die in their arms and there is nothing you can do about it. I was lucky that day, and we have had several scary moments since, but sadly, I've known too many who can't say the same. My heart goes out to you all!!

I will say that through medication we have been able to subdue some of my daughters seizures, for now. However, I will also say, far too many children have be lost to this mystery and we as parents need answers. We, as parents, need to feel safe that we can put our children to bed at night.

We have an army of doctors that are ready, willing and able to help us, but we just need funding to help us understand this better. I am pleading to walk at least 10 miles a week and encourage you to do the same. I know times are hard, but if you can donate anything it REALLY does go a long way. If not, please just share this post as it helps spread the word.

Thank you,
Justin Rash